The City of Sacramento has reached a settlement of $15 million with Louis and Joanne Giorgi in the lawsuit over the tragic food allergy death of their 13-year-old daughter Natalie. The city also agreed on Oct. 5 that Camp Sacramento – where Natalie had a fatal anaphylactic reaction in July 2013 after biting into a peanut-containing snack – will become accredited with the American Camping Association and implement full food allergy training, accommodation and emergency protocols.

The lawsuit had accused the city and the camp of negligence, particularly in the training of staff who were meant to be serving allergy-safe food to campers with food allergies. In addition, after Natalie’s two epinephrine auto-injectors hadn’t stopped her fast-progressing reaction, the emergency response was slowed when the camp’s staff couldn’t locate the key to a medical cabinet that contained an auto-injector. (Louis Giorgi ultimately broke into the cabinet.)

Allergic Living Editor Gwen Smith speaks to Joanne and Louis Giorgi about everything from the lawsuit settlement, to their foundation’s aims, and their heartfelt desire to make Natalie’s name synonymous with positive change in food allergy research and education.

GS:Thank you so much for sitting down with Allergic Living. To start us off, perhaps you could speak about the lawsuit’s resolution. Why did you settle and what do you hope will come out of the settlement?

Louis Giorgi: We never really thought about it [a lawsuit] in the beginning. But when it became something that we considered, we thought it would be very consistent with the idea of raising awareness and making sure that we could get people to pay more attention to the issue [of anaphylaxis]. And I think we were able to accomplish that.

The City of Sacramento has made their statement and it is quite strong – they are going to make changes and those changes are going to protect future campers. Therefore, hopefully, there will never be another story like Natalie’s with those changes.

GS: What were the more important camp precautions that Sacramento has agreed to make?

Joanne Giorgi: Our understanding is that food safety training will have to go on. To us, the biggest piece is that people will receive training in food safety, and making sure, as the old saying goes, that every ‘i’ is dotted and every ‘t’ is crossed. There are checks and balances, and knowing that there are standards in terms of what they’re accounting for, what staff has been trained – all of those things are clearly important to us, and we thought would be important to other people with food allergies.

In the event of a case like Natalie’s, my understanding is that they will also have more procedures in place to help expedite emergency care.

LG: The American Camping Association has the criteria on their website of what they cover, and it covers everything from health forms and medication to medical facilities and requirements. It talks about the food safety aspect, transportation and emergency services – which will go beyond food allergies – but it encompasses keeping everybody safer. That was important for us.

GS: Louis, I was struck by what you said recently to the media. Your message to those in food services was: ‘Be aware of what you’re serving and who you’re serving it to.’ Can you elaborate on that?

LG: One of the journalists said, ‘Are you anti-peanut?’ And I said, ‘No, we’re not anti-peanut, we’re for awareness.’ There’s nothing wrong specifically with people eating peanuts or milk or whatever it is. But it is a simple thing to know – if that food were labeled, Natalie wouldn’t have eaten it. And we wouldn’t be talking.

That’s really what the point is. Who is your audience and what are you serving, and it doesn’t require any huge additional costs or special equipment. It’s simply a matter of knowing what you’re serving and who you’re serving it to.

GS: That’s also a good message because sometimes people who serve food might become fearful of allergies and think, ‘we just can’t serve these people.’ Have you run into that attitude?

JG: We have not. If anything, I think many restaurants have become better about with working with our needs. If we do eat out, there are many times that I feel much more confident than I did years ago that they understand, that there’s clearly somebody in the kitchen who gets what I’m talking about and is willing to work with us.

LG: I’ve seen a big difference, too. The other day we were at a store and looking for Halloween stuff – costumes mostly. But we saw there was a big list of allergens in the candy aisle. Again, it’s a simple accommodation: ‘Here’s what we have,’ and you look at the list and you pick what works for you. We were impressed, because that’s something we certainly didn’t see five years ago.

GS: You had already set up the Natalie Giorgi Sunshine Foundation. Will you be putting some of the settlement toward food allergy research or awareness through the foundation?

JG: The simple answer is yes, although we haven’t even wrapped our heads around that. We will use that [funds from the settlement] to continue to hopefully make an impact – and that would be felt in a big way by both research, clearly, and continued education. We haven’t formulated how it all breaks down. I think that in turn will make us feel good, so we can continue to do good in the [allergy] community.

LG: While we haven’t had a chance to formulate a plan at this point, we’re in the mindset that we would work with one of the universities and bring [the story of] Natalie to start the fundraiser, and work on a chair position or something to create an event, and then hopefully raise more money. We really do hope to be able to leverage Natalie in that way, and make a much bigger difference now.

[Editor’s note: Joanne and Louis explain that, before the settlement, Natalie’s foundation had already made a significant donation to research at Stanford University’s Sean Parker Center for Allergy & Asthma Research, plus contributed funds toward FARE Teen Summit and for FARE’s development of preschool allergy materials.]

JG: Going forward it’s finding ways, like Louis said, to leverage and get involved – helping people within the community … and hopefully making an impact in the research.

GS: Natalie’s passing did touch a nerve in the food allergy community. What have people told you about why they were so affected?

JG: The people who seem to be most affected are the ones we still hear from, the people who are just frightened it will happen to their child. And clearly that’s all of our fears when you’re living with a child with food allergies. [Natalie’s siblings also have allergies.]

We still hear from people primarily for one of two things. One is the people who are still struggling to get those around them to take their child’s food allergies seriously, and then we also hear the stories from families who have shared Natalie’s story and effected change [such as at school or a camp]. And we’ve also had people tell us they never carried EpiPens – and now they carry them.

LG: We’ve had people even say that their doctors never seemed to pay that much attention and they kind of changed their management in terms of being on top of having the auto-injectors, and coming up with an action plan. They never had one before until after Natalie.

JG: Those are the little stories that people will reach out and let us know. I had one mom send me a very nice story that she felt Natalie’s presence in a room when she and her husband were disagreeing about whether to give the epi or not. She said she just gave it because ‘I literally felt your daughter’s presence saying, Give it. Give it.’

Those are amazing stories to hear – that by us sharing Natalie’s story that we can have impacted, or even changed within the community how somebody was doing things. Because our goal is that nobody else suffers the same loss.

Natalie with her mom, Joanne Giorgi.

GS:You mention the impact on physicians, and even allergists were affected. Most now give the advice to give the epinephrine if it’s suspected that the child has consumed the allergen. We used to be told, ‘wait for symptoms.’ So that’s a big change. Do you view this as part of Natalie’s legacy?

JG: Yes, and we have been told as much by different allergists.

LG: It truly seems to be that the treatment protocol has changed. People have said that it’s remarkable that Natalie never had a reaction before. And you know we were so careful and she was so careful, and we did what we were told to do.

So really the only way to ultimately prevent this is to get the research figured out. Until that point, it’s going to be avoidance and awareness to keep everybody safe, medication as needed and protocols being changed. But if we can change the research and change the disease itself, that would be the ultimate goal.

GS:Louis, one thing raised in the settlement was that your arm was quite injured as you were trying to get the camp’s auto-injector out of a locked cabinet, after you’d administered your own injectors to Natalie. Is it correct that this injury means you can no longer work as a urological surgeon?

LG: It is, but it doesn’t seem right to talk about it in the same sentence. We lost Natalie that night – so that’s very, very secondary to us. The message – the meaning – is Natalie and making a difference. My injury doesn’t make a difference to anyone, but Natalie can make a difference. The important part is her story.

GS:Your lawyer Roger Dreyer put it well though, simply referring to your injury as the “cascading effects of Natalie’s loss.”

JG: I think most people, except those closest to us, were unaware of the fact that Louis lost the use of his left arm from a surgical perspective. I have said, and I will always say, that he fought valiantly and courageously to try and save Natalie’s life that night. Nothing short of heroic is what he tried to do to save her, and unfortunately in the process, to Roger’s point, there were some other cascading elements that happened.

GS:Joanne, one of the things you have done in terms of advocacy was to testify in support of California’s school stock epinephrine law. However, now we’re seeing some school epinephrine laws getting caught up in the EpiPen pricing controversy, with some critics viewing stock epi laws as a marketing strategy. What would you like those reporters to know about stock epinephrine?

JG: Well, I know of a couple of instances in California where stock epinephrine was used and helped mitigate a tragedy and possibly save a life. Clearly, there’s something going on with the pharmaceutical company that makes us all raise our eyebrows. That being said, do I still think it’s important that all schools to have epinephrine accessible and designated in our schools? Absolutely!

I still feel strongly about that. Perhaps even more so – because if you know families that are having a hard time paying for one set, they might not have a second set that they’ve provided to a school. Then that even becomes more of a lifesaving tool for those kids who are diagnosed.

GS:You have spoken of positive momentum. Do you think the high profile of Natalie’s passing will help to prevent other deaths?

JG: I hope so. I would continue to hope that her story stays out there, so that no family is faced with watching their child die from anaphylaxis. We’ve got some momentum so hopefully some change will happen, and we have seen positive steps – like your point that allergists now instruct people differently.

But I think there’s still much, much more education to continue to happen. With anaphylaxis, I can’t stand ever hearing it being made fun of or jokes being made about anybody suffering an allergic reaction. That’s the stuff that sometimes makes you go, ‘Wow we really have a lot more work to do.’ I’d love to see that change in the near future.

LG: In terms of momentum, if parents are paying more attention because there are so many numbers, if schools are paying attention because their kids are being affected, if Natalie’s picture and story helps to keep those auto-injectors in schools, that will make a difference. The doctors changing their [action] plans, that all makes a difference and adds to the momentum. The camps – maybe this will help change them.

We’ve gotten all those emails from all those steps where people get affected every day: their schools, their teams, their families making little changes and paying attention. Clearly, restaurants are much more aware. All of those things are great momentum, and whatever part Natalie played in that makes us feel just a little bit better.

JG: Always as a stressor for families is flying; that question of what would be safe when we get on an aircraft and what’s their policy. I’m not sure if I’ve ever shared this, but on a flight maybe six months after Natalie passed away, when I explained about our kids’ allergies – our kids who are still with us – I had flight attendant take a wallet-size picture of Natalie. And do you know that the captain flew with Natalie’s picture at the front of the cockpit – for the entire flight?

So there are little stories like that, and I think there’s momentum. I do believe that good is mostly out there, that people want to help, that people want to try and make things safer for everyone. If Natalie’s story helps give this momentum, then that’s why we continue to share her story.

GS:Yet a problem with the airlines is that the allergy policies and their application are still inconsistent.

JG: Right, it is inconsistent and it shouldn’t take one of us talking about my 13-year-old daughter to have a really safe flight – no one wants to have to do that.

GS:I’d like to thank you both for your support of the community in Natalie’s name. Have you any parting thoughts to share with our readers?

LG: We’ve been very thankful with the outreach we’ve received from the community, and we want to continue to work and make it better for the entire community.

JG: The community and their support of us, their genuine caring for Natalie …. It really keeps us going to know that we can hopefully continue to do good things in Natalie’s name. We hope impactful things that can help pave the future for their children.

]]>Special Report: Top Studies from the AAAAI 2016 Allergists’ Meetinghttps://allergicliving.com/2016/03/15/special-report-top-studies-from-the-aaaai-2016-allergists-meeting/
https://allergicliving.com/2016/03/15/special-report-top-studies-from-the-aaaai-2016-allergists-meeting/#respondTue, 15 Mar 2016 12:59:21 +0000https://allergicliving.com/?p=40326We bring you extensive coverage from the largest gathering of allergists in the world.

At the March 2016 annual meeting of the American Academy of Allergy Asthma and Immunology, held in Los Angeles, thousands of allergists from around the world came together to share and debate studies in allergy and immunology. Allergic Living was there, and we offer you an insider glimpse of some of the biggest breakthroughs, and what’s ahead in terms of prevention and treatments.

LEAP-On and EAT Studies

Twelve months later, the LEAP-On study, the follow-up to last year’s LEAP research, was still the biggest news. Here we bring you our detailed news story of the study, as well as an analysis by Allergic Living editor Gwen Smith on the change in culture and attitudes toward early peanut introduction that LEAP-On will take among physicians and parents alike. Plus, our article on the related EAT study, which saw researchers starting to experiment with early introduction of major allergens other than peanuts.

]]>Families who endure bad reactions, high anxiety and more to help move food allergy trials forward are often hailed as unsung heroes. This profile of a few such families is from Allergic Living’s Summer 2015 magazine. Subscribe here to receive the magazine and more such articles.

Ewan and younger brother Carsten Diamond help out in the kitchen.

HE WAS a few months shy of 3 years old when Ewan’s mom, Natasha Diamond, witnessed her son’s first severe allergic reaction. His lips swelled and hives broke out and soon morphed into huge welts all over his body. His normally pale skin turned bright red, his ears went purple and when he started to cough, Diamond administered an epinephrine auto-injector to his thigh. That halted the reaction, but the needle sent the boy into a screaming fit. Then, for the next hour, a lethargic Ewan sat, watching “Curious George” on a DVD player and scratching his irritated skin.

To those familiar with anaphylaxis, this episode might seem unremarkable, a worrisome but not uncommon allergic reaction. But this didn’t happen at home or on the playground, or from an accidental bite of peanut in a friend’s snack. Instead, Ewan was in a doctor’s office where nurses were purposely feeding the boy his allergen, to see how much peanut his little body could handle. Ewan is taking part in a clinical trial at the University of North Carolina at Chapel Hill. Doctors there are studying children between the ages of 1 and 4 to see if they can first desensitize them to peanut, then potentially make them tolerant over the long-term; in effect, “curing” them of this allergy.

Diamond knew her son was allergic because of his history with eczema and skin-prick test results that showed allergies to peanuts, dairy and egg. But that day in the clinic was the first time he had actually eaten one of his allergens – Ewan’s first anaphylactic reaction was in the name of science.

Ten years ago, oral immunotherapy and other treatments for food allergies were in their infancy. Researchers postulated that, in theory, having an allergic child consume tiny, then gradually increasing amounts of an allergenic food should help to retrain the immune system, allowing that patient to gain new tolerance to the offending food. After all, this type of therapy was used widely in the allergy shots to treat patients sensitive to environmental triggers like pollens and cat dander.

But making people less allergic to food hasn’t been as easy. Researchers now know that oral immunotherapy, or OIT, won’t work for everyone. When it does work, there are rules and caveats: you can’t exercise after consuming your dose and you might have a greater risk of a reaction if you take your dose on an empty stomach or when you’re sick.

The fact that doctors have learned anything at all about these treatments is thanks to families like the Diamonds. These are the brave parents who sign their kids up for peanut challenges and disrupt their families’ already hectic lives for visits to the clinic. Some travel miles to get to research centers, others have to rearrange work and school schedules. Young children give up extracurricular activities, and courageously endure side effects, such as nausea, vomiting and itchiness.

Researchers at numerous centers are trying different therapies and combinations of therapies in the quest for reliable treatments, so that those with food allergies don’t have to live with the ever-present fear of a fatal wrong bite. Taking the allergen orally, like Ewan does, is one approach. But there are also clinical trials in which patients take the allergen under-the-tongue, through a patch applied to the skin, or in combination with other medications and treatments. It’s more than peanuts being studied, too. Oral immunotherapy trials are underway for milk and egg, and researchers are also studying a patch for milk allergy.

These patients and their families are the test subjects, the ones moving allergic science forward by taking the risks of trying out new and experimental treatments. “We often call them heroes,” says Dr. Hugh Sampson, the director of the Jaffe Food Allergy Institute at the Icahn School of Medicine at Mount Sinai in New York. “They’re willing to go through these therapies in the initial stages when we’re still trying to figure them out.”

Risks Faced Before Rewards

THESE families are also pioneers. Their children are among the first to get treated for a disease for which there previously has been no treatment. While no one is shouting, “I’m cured” from mountaintops, the families for whom the treatments appear to be working are optimistic that they can begin to let down their guard, even just a little bit, and let their children live a more normal life.

For her son Stirling, Sherry Cope desperately wanted to get closer to that reality. His severe allergies were discovered at 14 months when he took a nibble of his older brother’s Ritz peanut butter cracker and immediately started to cry and break out in hives. In the doctor’s waiting room, Stirling’s reaction turned into full-blown anaphylaxis, and a later blood test confirmed he had a severe peanut allergy as well as a tree nut allergy.

The next few years were hard as the Cope family got used to reading every food label, speaking to restaurant managers and educating his preschool.

Originally from England, the family travels back to Europe often. “Flying was a nightmare,” says Cope, since not all flight attendants would ask passengers to refrain from eating peanuts and nuts. At age 5, Stirling had his next serious reaction at a hotel in Spain, when a bartender served peanuts before putting Stirling’s straw in his fruit juice. All it took was Stirling putting his lips to the straw to throw him into a severe anaphylactic reaction, landing him in the hospital overnight.

With such a serious allergy, Cope and her husband lived in fear of accidental exposures and wanted to do something to make their son less allergic. They considered moving back to England to take part in peanut OIT research at Cambridge. But in clinical trials, to prove that the peanut desensitization is actually working, some participants will only receive placebo treatment. Knowing that at the end of two years they might find out Stirling wasn’t actually being desensitized made them reconsider a move.

Then Cope heard about a study in her hometown of Chicago that was enrolling a small number of children. In this study, doctors wanted to see whether giving patients Xolair, an asthma medication taken by injection, before they started the oral immunotherapy would make the treatment more effective. With the study close to home, and knowing that everyone got the peanut (some got a placebo instead of Xolair), the Copes signed Stirling up.

Families who take part in oral immunotherapy and other trials know they are signing up for something with risk. After all, if your child isn’t on the placebo, he will be eating his allergen, the very food you’ve been doing everything in your power to avoid, everyday.

]]>https://allergicliving.com/2016/02/18/brave-pioneers-the-families-in-food-allergy-trials/feed/0Allergist Who’s Driven to Solve the “Whys” of Food Allergyhttps://allergicliving.com/2015/06/09/allergist-whos-driven-to-solve-the-whys-of-food-allergy/
https://allergicliving.com/2015/06/09/allergist-whos-driven-to-solve-the-whys-of-food-allergy/#respondTue, 09 Jun 2015 12:50:26 +0000https://allergicliving.com/?p=35137She’s one of the brightest lights in the next generation of allergy researchers. But Dr. Corinne Keet, an assistant professor of pediatrics at Johns Hopkins University, never rests on the laurels for her latest scientific publication or conference presentation. Instead, she is always moving on to her next study, and another key unanswered allergy question.... Read more »

]]>She’s one of the brightest lights in the next generation of allergy researchers. But Dr. Corinne Keet, an assistant professor of pediatrics at Johns Hopkins University, never rests on the laurels for her latest scientific publication or conference presentation. Instead, she is always moving on to her next study, and another key unanswered allergy question.

Keet is a prolific researcher, investigating everything from nutrition in food-allergic children to food allergy treatments, and allergy and asthma in inner-city neighborhoods

In our “Allergy Explorers” series at Allergic Living, we honor researchers who are diligently trying to solve the allergy puzzle. Keet says she’s motivated to do her research by the patients she sees in her clinic – and we’re inspired by her desire to understand allergic disease and find a safe and effective treatment.

Contributing Editor Claire Gagné spoke to allergist Corinne Keet about her current research, her personal connection to the disease, and what it was like to cast doubt on the effectiveness of OIT.

How did you become interested in food allergies?

Corinne Keet: I went into allergy and immunology thinking I would focus on immunodeficiencies, but I was drawn to food allergy because so many people are affected and so little is known compared to a lot of other fields in medicine. For example, we don’t know why some people develop allergies while others don’t, and we still don’t have good treatments for the disease.

I also do have a personal connection – I was allergic to eggs as a child, so allergy was something I thought about from a young age. Fortunately, my allergy was mild, especially compared to what I see in my practice. And I grew out of it by the time I was a teenager.

Where did you study allergy and immunology?

CK: I have been at Johns Hopkins for 11 years; I came to do my pediatric training, stayed for allergy training and then got on as faculty.

What are you currently working on in your research?

CK: Right now I’m working on trying to understand trends in food allergy over time; who is most affected, do blood markers of food allergy (i.e. IgE testing to foods) match trends in self-reported allergy, and why does food allergy seem to be so common now?

It’s a large amount of data – I’m looking at stored samples from large national surveys, and there are approximately 7,000 samples. This research hasn’t been published yet, so I can’t comment on the findings.

You’ve done considerable research on oral immunotherapy (OIT) and sublingual immunotherapy (SLIT). What interesting things are you finding out about these two potential allergy treatment methods?

CK: We did a few studies directly comparing OIT and SLIT for milk and peanut allergy and found that SLIT was much less effective than OIT, but that there were more side effects with OIT. This was interesting because before this scientists had done research on each of these treatments individually, but hadn’t compared the treatments in the same group of people. Our results suggest that, at least as has been seen in the research thus far, SLIT is a less promising treatment.

You have published a study that called the long-term effectiveness of OIT into question. Did you feel like you were dashing everyone’s hopes for a cure?

CK: After our original studies of OIT for milk allergy, we knew this treatment wasn’t yet ready to be used in general allergy practice for safety reasons, but we thought that many patients would come out of OIT ready to put their allergies behind them.

After several more years, some patients were doing really well after completing the therapy, with milk in their diets without problems. But many were still having some problems with milk; reactions every now and then, or feeling terrible if they consumed too much dairy at one time. Only 25 percent were consuming milk without symptoms, whereas 38 percent had frequent or predictable symptoms, and 16 percent were not consuming milk at all. For most patients, they were able to tolerate more milk, but the allergy was still there.

This was disappointing, but I think it’s really important that these therapies are rigorously evaluated before being adopted in the community. These treatments are not low risk, and it’s essential that we understand the benefits and the risks. I know people are anxious for a treatment, but there are dangers in rushing into things.

Keet’s current focus is looking into why the prevalence of allergies is growing. Today, 1 in 13 American children has an allergy.

How do you foresee food allergy being treated 5 years from now? Or 10 years from now?

CK: The honest answer is that I don’t know how food allergy will be treated in five or 10 years from now. I hope we have developed methods of treating food allergy that are safe and effective – these methods may incorporate OIT, but they may not. It may also end up being the case that there is not a single treatment for everyone, but that we have more personalized treatments based on biomarkers or other risk profiles.

Personally, I’m interested in hearing more about the results of the allergy patch trials (I’m not involved in that research), and in seeing how immunotherapy might be combined with other medications or compounds to either increase the effectiveness or decrease side effects.

You have also been involved in research that has looked at the growth of kids with food allergies. Is this a big concern?

CK: Many allergies, such as peanut and tree nut allergy, don’t have a major impact on nutrition. However, milk allergy, in particular, can affect children’s growth because milk and milk products are such a big part of the typical U.S. child’s diet. For kids with milk allergy, it is important to make sure they are getting enough protein, calories, vitamin D and calcium.

You recently published a paper that found that the high prevalence of asthma in inner-city neighborhoods is a result of demographics and not actually from living in an urban environment. What is the relevance of that research?

CK: I was applying for a grant and I was trying to put in a sentence about the prevalence of asthma in inner-city neighborhoods across the United States, and I couldn’t find a number. I started to look into it more and I and realized that this hadn’t been described across the U.S.

So we did a study and we found that living in a city wasn’t a risk factor, per se, for having asthma, but that being poor or being of Black race or Puerto-Rican ethnicity were strong risk factors for having asthma, regardless of where you lived.

The study didn’t focus on whether living in a city made your asthma worse; we are looking at that now. I think the relevance of this research to public health is that we need to make sure we understand that asthma is found everywhere, and that we look into the factors that contribute to developing asthma across the U.S., not just in inner cities.

Did you also looked at allergy in inner-city neighborhoods?

CK: We did look at food allergy in a parallel project; that paper will be published soon in the Annals of Allergy, Asthma and Immunology. I can’t comment on the findings just yet.

]]>https://allergicliving.com/2015/06/09/allergist-whos-driven-to-solve-the-whys-of-food-allergy/feed/0What’s in $24 Million? The Gift of Hope for Food Allergyhttps://allergicliving.com/2014/12/30/whats-in-24-million-the-gift-of-hope-for-food-allergy/
https://allergicliving.com/2014/12/30/whats-in-24-million-the-gift-of-hope-for-food-allergy/#respondTue, 30 Dec 2014 14:00:22 +0000https://allergicliving.com/?p=31915Speechless! Awesome!!!! My family is so grateful to you – God bless your generous heart! THANK YOU Sean Parker. Amazing!!! Many blessings to you and your family!!! I love this man!! (Sample comments from Allergic Living’s Facebook page.) On December 17, 2014, the food allergy community used up its quota of exclamation marks to thank... Read more »

]]>Speechless!
Awesome!!!!
My family is so grateful to you – God bless your generous heart!
THANK YOU Sean Parker.
Amazing!!!
Many blessings to you and your family!!!
I love this man!!(Sample comments from Allergic Living’s Facebook page.)

Sean Parker

On December 17, 2014, the food allergy community used up its quota of exclamation marks to thank tech entrepreneur Sean Parker from the bottom of their hearts. He had just pledged $24 million to food allergy research at Stanford University’s school of medicine, and his mission for the money was clear: To find a cure for food allergy.

Think about that number – not one or even 10, but $24 million. This gift to Dr. Kari Nadeau and her outstanding team at Stanford is the biggest one-time donation we’ve seen in food allergy.

The immune-based condition is usually the poor sister of disease research, and chronically underfunded. For perspective, consider that the total U.S. government funding for all food allergy research in 2014 is $37 million.

The pledge from Parker, the billionaire former president of Facebook and co-founder of Napster, raises spirits in the food allergy community that a solution to the scourge of life-threatening anaphylaxis might finally be within reach.

It won’t be a slam dunk: the research will involve greater knowledge of the mechanisms of food allergy and clinical trials, but at least Stanford’s pivotal research group has the means now to aim, with new vigor, for the ultimate objective.

He likely wasn’t aware, but Parker’s timing for this announcement could not have been better. Around Thanksgiving 2014, the food allergy community was left reeling from the news of four food-related anaphylaxis tragedies. Those who died were young men full of life and potential: one in high school, another studying to be a nurse, another an art student and the fourth beginning a career in broadcasting.

Parents and those with food allergies still hadn’t recovered from Halloween, and the passing of little Joseph DeNicola, all of 7 years old. This was a North America-wide community in collective pain.

Parker’s announcement was like a balm for wounded souls – the much-needed gift of hope. Interestingly, $4 million of the $24 million is being used to establish a dollar-for-dollar challenge match for all other new gifts to the Stanford center that will be renamed the Sean N. Parker Center for Allergy Research.

While 99.9 percent of us can’t donate on his scale, Parker is clearly encouraging others to give generously to food allergy research. Deep-pocket pledges are always most welcome, but donation is not just the domain of the rich – get enough of medium-sized and modest contributions together, and they become a significant pool of funds.

Consider that FARE (Food Allergy Research and Education) had a strong 2014, raising $5.2 million through its galas, luncheons and golf events, much of which will go to research. Sixty communities across the U.S. also worked tremendously hard for the FARE Walks for Food Allergy, and with one hundred dollars here and a few thousand dollars there, an impressive $3 million was raised for the cause.

Money is the grease that drives research forward. Dr. Nadeau lauds her new benefactor as “a visionary”, but it clearly takes one to know one. Kari Nadeau has led in the area of combination food allergy therapies, rapid desensitization and multiple food allergy desensitization. She is a brilliant scientist with a strong team, and also a caring physician with an incredibly supportive patient community.

In her modest fashion, Dr. Nadeau would be the first to mention that she’s not the only leader in the field. Allergists and immunologists at New York’s Mount Sinai, London’s King’s College, Baltimore’s Johns Hopkins, Cincinnati Children’s Hospital and more are contributing to a significant and evolving body of food allergy research. By mid-2014 the pace of new findings seemed to be quickening, with profound new insights into the importance of the skin and the gut.

It’s hard to speak of “visionary” and not mention the work of Mount Sinai’s Dr. Xiu-Min Li and her B-FAHF-2 Traditional Chinese Medicine herbal formula, which has shown great success in individual patient cases. With the latest refinements of her formula, Dr. Li is now also raising funds for a full clinical study.

Whether you choose to donate to FARE, directly to Dr. Li, add to Stanford’s burgeoning effort or donate to another of the allergy centers, let’s all help to make 2015 the year that thousands more individuals contribute gifts of hope – large and small – to food allergy research.

We are indebted to Sean Parker for the vision to see that this field of medical research desperately needed a major infusion of funding. And also for adding a sense of urgency to finding an enduring solution. The underlying message of his big contribution is clear: Let’s get it done.

WHEN our son Kieran was a baby, my husband and I learned about most of his allergies the scary way. The first time we fed him a nibble of cheese, his face blew up and he began wheezing and gasping for breath and had to be hospitalized. We took him to an allergist who diagnosed him with a dairy allergy.

We wanted to know what else he was allergic to, so as not to have any more hideous surprises, but she explained allergy testing wasn’t done on babies. We discovered he had a severe egg allergy only on his first birthday, when we served him a dairy-free apple spice cake made with two eggs. An hour later, hives were covering his body and he had to spend his birthday night on IV steroids and other medications in the hospital.

Food allergy testing is generally considered too inaccurate to be of value in young children. Food allergies require an exposure to the food in order for the immune system to mount a response, which is what the two commonly used allergy tests measure. The current standard blood test measures an antibody (IgE) involved in the allergic response, and a skin-prick test involves seeing if a small amount of the allergen, stuck into the skin, causes a reaction.

Even in older children, the tests are unreliable. “The IgE blood test only represents a protein which is 1/100th of all the items we think are involved in allergy,” explains Dr. Kari Nadeau, a leading food allergy researcher at the Stanford University School of Medicine in California. “IgE is important, but it is not the only marker.” A high level of IgE can indicate an allergy, but it may not; and some severely allergic people have low IgE scores.

In order to spare families the experience we had, Nadeau and her colleagues have been working to develop better predictive tests for allergies. Nadeau (in collaboration with the laboratories of professor of microbiology and immunology Stephen Galli, and professor of genetics Leonore Herzenberg) has recently patented a new diagnostic test that could be easily done with a few drops of blood from the heel stick of a newborn.

The diagnostic allergy test (DAT) involves mixing the blood with 90 different potential allergens – bee venom, peanut, soy and so forth – to measure the reactions in various types of white blood cells. These tests are still experimental, but pilot studies so far suggest that they can identify allergies with 95 percent accuracy (compared with 65 percent for the standard IgE test). And the test is accurate for both newborns, and for older children and adults.

The hope is that this test will eventually not only identify an allergy, but also predict how severe that allergy will be.

The environment of the cells is manipulated in ways that mimic environmental stresses – exposure to viruses, different temperatures and oxygen levels – to see if an allergic reaction develops, and, if so, how severe it is.

The critical question, however, is not just whether a child has food allergies, but whether those allergies could be life-threatening.

If you knew your peanut-allergic child would only ever have itchiness and need antihistamines, you might let him eat in an Asian restaurant, risking that the food would be cross-contaminated with peanut oil, and you might keep foods he is allergic to in your house. If you knew he might die, you would consider that madness.

Nadeau has developed another new blood test called the therapeutic exam for allergy (TEA) that examines genes that play a role in the allergic response. One such gene, called FOXP3, is found in a type of white blood cell whose job it is to modulate and suppress other cells that are becoming inflamed or overactive, as happens in the case of an allergic reaction.

Nadeau has discovered that in food-allergic individuals this gene is disabled by a chemical coating that prevents it from being expressed (a change not in the genetic code itself, but in the way the gene functions, known as an epigenetic change).

Photo credit: Michael Callahan

Kieran’s twin sister, Violet, developed an allergy to peanut. Just before her third birthday, we did a food challenge and she reacted to about an eighth of a peanut. Yet, when we repeated the food challenge a year later, she was able to tolerate a whole peanut with only a minor reaction.

In order to help her body lose the allergy, we were told to feed her a serving of peanut butter every day. At first she frequently had mild reactions, but after a year they became rare.

Recently, however, she had a stomach flu and ate no peanut butter for six days. The next day, still weak from the flu, she had a strong reaction: her face got hives, dark red circles formed under her eyes and she had a coughing fit that lasted 10 minutes.

I panicked. After eating peanut butter for a year could she have regained the allergy enough to have a life-threatening reaction? Was this a sign that it was important to continue to eat the food regularly or that we should stop eating it altogether? I watched her, sick with dread. Just when I was about to call 911, her coughing subsided.

Most allergists would say that in order to keep Violet safe we would have to return to our oppressive former program of strict avoidance and bring our own food everywhere. But Nadeau was able to test Violet’s blood with the new DAT test and found that, when exposed to peanut protein, Violet’s cells showed no reactivity.

Moreover, the Nadeau lab found that, through the TEA test, Violet’s FOXP3 gene lacked the chemical coating that disables it from being active in people with peanut allergies.

Having a virus (as Violet did when she reacted) lowers the threshold for anaphylaxis so the Nadeau lab simulated a viral infection in Violet’s blood. And, indeed, under that condition her blood did show some reactivity to peanut. We could be confident, however, that this reactivity would not lead to a life-threatening reaction because it was mild and her FOXP3 gene was active and able to modulate an allergic reaction.

So we returned to a life of peanut-butter breakfasts and freedom from anxiety. Once these tests are licensed and in use, many others can look forward to such life-altering revelations as well.

Melanie Thernstrom is an author and contributing writer to The New York Times Magazine.

A common class of gut bacteria has the potential to prevent and even treat food allergies, according to a groundbreaking study published in August in the Proceedings of the National Academy of Sciences.

Using lab mice, a team of scientists from multiple institutions discovered that bacteria from the class Clostridia appeared to prevent the development of peanut allergy. Various bacteria are normally present in the digestive system as part of “the microbiome” – the trillions of micro-organisms that live inside mammals and help the body function properly.

“Clostridia protected mice from becoming sensitized,” Cathryn Nagler, study author and professor at the University of Chicago, told Allergic Living. “Using it therapeutically is the next step.”

The study is generating considerable excitement in the allergy research community and widespread media attention.

To conduct it, the research team altered the natural microbiome development of the mice by either giving them antibiotics early in life or (in another group) by raising them in sterile, microbe-free conditions. Afterward, all mice were sensitized to peanut. Both groups had more markers of peanut allergy when compared to mice with “normal” gut bacteria that underwent the same peanut sensitization process.

The researchers then determined that bacteria from the class Clostridia were responsible for the differences in sensitization. Mice lacking these bacteria had higher levels of peanut protein in their blood, which the researchers note was also tied to the level of sensitization. By introducing Clostridia to either group of mice before peanut sensitization, the peanut sensitization was prevented.

This protective effect was not observed when the mice were given other microbiota, including another common group of gut bacteria known as Bacteroides, highlighting the importance of Clostridia.

Nagler says there appears to be a barrier-protective effect: the bacteria’s presence caused a chain reaction beginning with Clostridia interacting with immune molecules in the intestine, and resulting in far less uptake of peanut protein into the bloodstream. The reduced ability of the molecules to pass through the intestinal barrier into the bloodstream is believed to be behind the observed protective effect.

(Although the problematic bacterium C. difficile is part of the Clostridia class, it is from a separate subgroup and is unrelated to the bacteria used in this study).

The next step is to start assessing how the findings could translate to humans – with the ultimate goal of one day producing a therapy, possibly a probiotic pill containing Clostridia.

“We hope it can be developed as both preventative medicine and treatment,” says Nagler. “We still have a lot to learn and are a long way from clinical trials, but we will keep working hard.”

]]>https://allergicliving.com/2014/09/11/gut-bacteria-show-potential-to-block-even-treat-peanut-allergy/feed/0Largest-Ever Food Allergy Study Beginshttps://allergicliving.com/2013/04/10/largest-ever-food-allergy-study-begins/
https://allergicliving.com/2013/04/10/largest-ever-food-allergy-study-begins/#respondWed, 10 Apr 2013 21:34:10 +0000https://allergicliving.com/?p=16664"This is a massive research project which will have far reaching consequences for consumers and food producers,” said professor Clare Mills of the University of Manchester

]]>The world’s largest-ever food allergy study has just launched. Called iFAAM, the study involves leading allergy experts from the U.K., United States, Europe and Australia, as well as food manufacturers and patient groups. It will delve into potential causes of food allergies and zero in on ways to reduce risk for people with severe food allergies.

“This is a massive research project which will have far-reaching consequences for consumers and food producers,” said professor Clare Mills of the University of Manchester’s Allergy and Respiratory Centre and the new head of the $14 million iFAAM study, which stands for Integrated Approaches to Food Allergen and Allergy Risk Management.

One of the main goals of iFAAM is to reduce the use precautionary “may contain” labels on packages to those food products which truly require the label. As ‘may contains’ have flourished in the marketplace, the choices for food-allergic consumers have become increasingly limited. The researchers plan to develop standardized processes and enforcement rules for European food manufacturers to follow to reduce risks of cross-contamination with allergens, and streamline processes to test foods for allergens.

Another section of the study will attempt to explain why individuals develop food allergies. A research group will examine whether the early introduction of allergenic foods in a baby’s diet and other nutritional aspects play a role. A related group of researchers will try to identify who is more likely to suffer a severe allergic reaction, and whether diet during pregnancy is related to the onset of food allergy in infants.

This study builds on $21.9 million worth of research from the EuroPrevall project, which Mills also headed and which focused on food allergy prevalence across Europe.

From the Allergic Living archives. First published in the magazine in 2010.

AVOID, AVOID, avoid. That’s how Ann Jeannette Glauber had been treating her 4½-year-old son’s allergies to eggs, milk, peanuts, nuts and shellfish. But at a party a few years ago, Theo grabbed and ate a handful of Goldfish crackers (which contain dairy) before she could stop him.

“I kind of freaked out,” she admits, since her son had previously had an anaphylactic reaction to cottage cheese. Theo didn’t react to the crackers, but avoidance remained the family watchword.

The boy, however, turns out to be among the 75 per cent of kids allergic to dairy whom researchers now believe can actually tolerate milk – provided it has been extensively heated through baking. The same holds true for egg.

While under supervision at Johns Hopkins University School of Medicine in Baltimore, Theo on separate occasions was able to eat one-twelfth of an egg and a quarter cup of milk, both of which were baked into a cake. Emergency treatment was at the ready, but he didn’t react. By May, the boy had started a new diet at home that includes muffins, breads, even croissants; foods thoroughly baked at 350 degrees for at least 30 minutes. There has been a sanctioned bite of lasagna and, in the next phase, Theo will be testing out pizza, which isn’t cooked as long.

Allergists have long heard stories of allergic children who have accidentally eaten milk or egg – perhaps grandma fed the child an off-limits cupcake, or a daycare provider didn’t realize that cookies contained egg – without reactions.

But researchers are getting closer to understanding why kids like Theo can tolerate milk or egg that has been baked, while others still will react immediately. They’re also finding that introducing the baked food into the diet may actually help the child outgrow the allergy.

At Johns Hopkins, some dairy-allergic kids, including those who have had significant reactions to milk in the past, have even moved on to unheated foods such as yogurt and chocolate milk.

The best news: this is research that doesn’t have to wait for clinical trials and government approvals. As long as you begin at the office of your allergist, and he or she has the resources to perform food challenges safely, introducing baked milk or egg into your child’s diet is “something that can be done right now,” Dr. Wesley Burks, head of pediatric allergy and immunology at Duke University Medical Center, told the American Academy of Allergy, Asthma & Immunology conference in New Orleans in 2010. He called this means of treating milk and egg allergy a “paradigm change.”

Added Dr. Hugh Sampson, chief of allergy and immunology at New York’s Mount Sinai School of Medicine and leader of the research: “What it means is that as opposed to going to birthday parties and not being able to eat cake, or going to school and worrying about somebody eating a cookie that has milk or – they can suddenly do all this.”

Against the Grainof Avoidance

THE CONCEPT of feeding allergic kids baked milk or egg goes against longstanding food allergy management practice and what parents like the Glaubers have been doing to protect their children. That is, they do everything in their power to ensure that not a morsel of the allergenic food crosses their child’s lips. A shift in thinking began a few years ago with a study performed by Sampson and his colleagues at Mount Sinai.

They gave each of 100 milk-allergic kids a muffin to eat that contained 1.3 grams of milk protein, in the form of dry milk powder. If a child was able to eat the muffin, baked for 30 minutes, without a reaction, two hours later he or she was served a waffle, which was only cooked for three minutes.

Sampson and his team found that 75 of the 100 children tolerated milk that had been extensively heated, and they were told to keep it in their diet.

While in the past it had been believed that kids were more likely to outgrow a milk allergy if they successfully avoided it, this study suggested otherwise. In follow-up appointments three months later, those children who had continued to eat baked milk products showed a significantly smaller wheal (hive) on a skin-prick test compared to the beginning of the study.

They also had increased levels of milk protein IgG4 levels, an antibody associated with a protective effect against allergies. (A similar study, with similar results, was performed with baked egg.)

In Baltimore at Johns Hopkins, they’ve taken “the research from the paper to the kid,” says Kim Mudd, a research nurse and the program’s coordinator. Under the direction of allergist Dr. Robert Wood, she and her colleagues are working with close to 200 patients on baked milk or baked egg challenges. The children are coming into the clinic and are eating, under supervision, milk or egg in a muffin or cake that has been baked at 350 degrees Fahrenheit for 30 minutes.

The success rate with the baked form has been noteworthy: “Many of these kids outright failed straight-up milk or egg challenges, or have had a milk ingestion that resulted in significant symptoms,” says Mudd.

These children are sent home from the clinic and told to keep baked milk (or egg) in their diet. They slowly increase the amount of baked allergen that’s in the foods they eat and, over time, are encouraged to try foods that have been cooked for a shorter time. Pizza is one example, or a food with more milk and that’s been cooked on the stove, such as pancakes. Some kids have eventually been able to tolerate milk that hasn’t been heated.

Researchers at Mount Sinai, meanwhile, have been trying to figure out what it is that’s different in the kids who can tolerate baked milk, versus those who can’t. They’ve zeroed in on an answer, and it’s to do with the way the immune system recognizes the amino acids in the protein.

When milk is heated, proteins change shape and for some people, this means their immune systems no longer recognize them as an allergen. Having this information is a step in the direction of allowing many more kids to eat baked egg or milk in the diet. As it stands, the baked food must be eaten for the first time in a controlled setting equipped with emergency medication.

For Glauber, opening Theo’s diet up to include baked egg and milk has been life-changing. “You don’t have to worry about what’s in baked goods. You get a hot dog, you can eat the bun. You can eat bread or crackers. Theo’s just so excited, because it’s things that he’s always wanted to eat, like croissants,” she said.

First published in Allergic Living magazine.
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]]>https://allergicliving.com/2010/08/31/allergy-breakthrough-on-baked-milk-and-egg/feed/1New Research on Peanut Allergieshttps://allergicliving.com/2010/08/30/new-research-on-peanut-allergies/
https://allergicliving.com/2010/08/30/new-research-on-peanut-allergies/#respondMon, 30 Aug 2010 20:02:35 +0000http://allergicliving.ds566.alentus.com/?p=3384Peanut allergies are severe, often affecting children, and are increasing in prevalence. It’s no wonder researchers around the globe are looking at new, inventive ideas for how “cure” them, or at the very least, how to allow those with peanut allergies to tolerate at least a small amount of this legume’s protein. Allergic Living looks... Read more »

Peanut allergies are severe, often affecting children, and are increasing in prevalence. It’s no wonder researchers around the globe are looking at new, inventive ideas for how “cure” them, or at the very least, how to allow those with peanut allergies to tolerate at least a small amount of this legume’s protein.

Allergic Living looks at two of the latest ideas in the labs:

Peanut Allergy Vaccine

Researchers at Mount Sinai and Johns Hopkins University are studying a vaccine for peanut allergies to see if it is safe. The vaccine contains an altered peanut protein to “trick” the immune system. Dr. Scott Sicherer, an associate professor of pediatrics at the Mount Sinai School of Medicine in New York likens the changed peanut to a baby bracelet that spells “peanut.”

“If you altered that bracelet a little bit, let’s say you changed the ‘A’ in peanut to a ‘D’, then it would say PEDNUT instead of PEANUT,” he says.

The idea is that the person’s immune system won’t recognize “pednut” and won’t mount an allergic reaction to it. However over time, if it sees “pednut” enough, it may learn to tolerate “peanut.”

Once the safety trials for the vaccine, which is administered rectally as a suppository and also contains heat-killed E. coli, are complete, researchers will begin to study if it actually reduces peanut allergy in humans.

The Desensitizing ‘Peanut Patch’

Researchers are also looking at the possibility of desensitizing people with peanut allergies through the skin.

Dr. Hugh Sampson, head of the Consortium of Food Allergy Research in the United States, told Allergic Living magazine that U.S. researchers got the idea from French research, in which scientists have developed immunotherapy patches for cow’s milk allergy.

Those researchers placed a milk-containing patch on dairy-allergic patients every other day for three months. The results were that the patients were able to consume, on average, 12 times more milk without a reaction than they could before the treatment.